Anyone taken Heparin with Et?: On Saturday I... - MPN Voice

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Anyone taken Heparin with Et?

Nickthedevil profile image
25 Replies

On Saturday I slipped over on the decking when outside emptying the bin and broke my ankle! The hospital gave me heparin injections for 10 days due to being immobile. I was at a minor injuries unit and the nurse I saw had no knowledge of Et so she checked with a consultant at the main hospital site whether it was ok for me to take Heparin. She said it was but tbh she didn’t seem certain. I have now had 2 injections and tonight the injection site has bled a lot which I find worrying. I am going to ring my CNS tomorrow but I am wondering if anyone with ET has experience of this?

Karen x

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Nickthedevil
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25 Replies
Emmyroos profile image
Emmyroos

Hi Karen, I was on heparin during my pregnancy with ET - twice a day injections. I bruised a lot from each injection. My pregnant stomach was always covered with 1-2 inch bruises at all the injection sites. Be sure to rotate injection sites and stay 2 inches from the belly button. I do Pegasys injections in my stomach now. On rare occasions, I notice I suddenly bruise in one big spot. Its like I hit a blood vessel during that injection?... I don't know. Otherwise bleeding was very rare. Maybe just a little drop immediately after. If you are bleeding more than that I would definitely follow up with your MPN specialist. They are really the only ones that really understand this type of disease and thinning the blood with Heparin for a broken ankle. Good luck with the follow-up! And I'm so sorry you broke your ankle!!! No fun at all.

Nickthedevil profile image
Nickthedevil in reply to Emmyroos

Hi, thank you for your reply. The bleeding has finally stopped but I will definitely give them a call tomorrow. It really brought it home how little general health care professionals know about our condition. In addition to calling my CNS I will certainly be discussing it with the consultant at the fracture clinic on Wednesday. I am so frustrated by the fracture - my 3rd in 3 Years, shoulder, wrist and now ankle, and a scan shows no osteoporosis so I must just be clumsy! 😱

Emmyroos profile image
Emmyroos in reply to Nickthedevil

I'm sorry! Three in three years? Oh my, that's awful! As for health care professionals - I agree they know nothing about this. During my 1 million OBgyn appts during pregancy, they kept saying I had thrombocypenia (low platelets) at every visit. I was like NO!! I'm the opposite! I clot! Or bleed... its anyone's guess, really. Ha! But yes, no general health professional has a clue about this... and if they act like they do, I'm even more skeptical! I trust no one besides my specialist when it comes to anything with my health. Good luck. Rest up! Happy healing!

netty64 profile image
netty64 in reply to Emmyroos

I'm currently on heparin following a knee replacement surgery, I also had it earlier when I had my other knee done. I have had no problems. It could be that you hit a small blood vessel that was in that area x

Nickthedevil profile image
Nickthedevil in reply to netty64

Thank you. I have done todays injection and so far all is fine

Nickthedevil profile image
Nickthedevil

Thank you. I had a similar situation with my GP surgery where they thought I had thrombocytopenia and it took ages to convince them otherwise! Take care and stay well

hunter5582 profile image
hunter5582

This is why it is so important to consult directly with a MPN Specialist about these questions. Most docs just do not know the answers to questions related to MPNs.

I have been on heparin post-surgically and did not have a problem. It was a concern that due to the PV with thrombocytosis I would be at risk for a hemorrhage due to the elevated platelet levels. My von Willebrand factors do drop below normal sometimes when y platelet levels are higher. It is important to monitor for the potential for abnormal bleeding when you have ET and take a blood thinner. That is not to say you should not take heparin since there is certainly a risk of thrombosis. Just to be aware and monitor for potential issues.

Hope you recover ASAP.

Nickthedevil profile image
Nickthedevil in reply to hunter5582

Thank you. I will definitely call them today

gset profile image
gset

I also broke my ankle in December moving out of the way of a person on a path and falling down a small hole in verge. Again A&E checked with local haematologist but I also checked with my CNS who said it was ok to take. I have been fine so far but am being careful not to even cut my fingers etc. as I know I bleed easily when on blood thinners from previous experience. We are all so different although we have the same condition, it’s definitely best to check with your specialist or CNS. I hope you heal well, best wishes for a speedy recovery.

Nickthedevil profile image
Nickthedevil in reply to gset

Thank you, that’s reassuring. I will call my CNS today. I hope you recover quickly.Karen

AndyT profile image
AndyT

I’ve used heparin both post-operatively and for long haul flying (when we still could!).No problems apart from bruising around the injection site, which could be quite extensive but looked worse than it was.

The above was before I started Pegasys - my consultant advises I no longer need heparin for travel as my counts are in normal range and the issue of surgery hasn’t yet come up…

Definitely worth you getting further advice from your medical team.

Nickthedevil profile image
Nickthedevil in reply to AndyT

Thank you, I will call them today

IrishHiker profile image
IrishHiker

I have had it prior to and after surgeries but it was “low molecular weight” heparin taken once a day. No problems with it. If not administered properly (no pinching up skin to inject) then yeh you bleed plus always you get bruised.

Nickthedevil profile image
Nickthedevil in reply to IrishHiker

I am beginning to think it may be that I didn’t inject properly

Foodies profile image
Foodies

Hi Karen, sorry to hear you had bleed. I am a bleeder too but ,as Hunter suggests, am on Eliquis and doing well with it. Was on both Eliquis and Aspirin but getting little bleeds, so only on Aspirin twice a week now.Best of luck with it,

Nickthedevil profile image
Nickthedevil in reply to Foodies

Thanks very much. Glad to hear you are doing well

Peachjoy profile image
Peachjoy

Hi Karen, sorry about your broken ankle.

I am 62, diagnosed with ET JAK2+ sixteen years ago. So far maintained on aspirin.

However, in that 16 years I have had 3 hip replacements (one each and a revision on the right one). Also 2 left foot surgeries.

For each operation I had to stop taking aspirin beforehand. (The difference between our situations being that mine was planned and yours wasn’t)

Are you on aspirin?

After the surgeries I had to self inject with Heparin for a month to prevent clotting.

Sometimes I got a small bruise, but mostly not. I didn’t have any bleeding.

I do know that whilst in hospital with each hip surgery that my platelets raised up to nearly 1000,(causing alarm at the orthopedic hospital), however each day I Was tested and the platelet counts lowered down to ‘my’ normal, the 600s.

I would definitely contact your doctor who manages your ET for advise and reassurance.

Hope your able mends quickly,

Peachjoy

Peachjoy profile image
Peachjoy in reply to Peachjoy

Ankle, not able🤣

RCBr profile image
RCBr

I think you're supposed to administrator the injection below the level of the belly button too as the area above is more vascular and therefore will bleed more x

Nickthedevil profile image
Nickthedevil in reply to RCBr

Thank you I will try that today

Superwoman profile image
Superwoman

Hi Yes I had to do 10 Days of Heparin after my knee replacement back in 2014 but did not take my Hydroxycarbamide until finished, but all was OK bloods soon got back to acceptable levels once restarted, had to stop Hydroxycarbamide two days before op as well, but they constantly did blood tests to see if platelets were behaving.Mind you every time I injected it did bleed and got some lovely bruises to tell the tale but all was OK.

Jean

Nickthedevil profile image
Nickthedevil in reply to Superwoman

Hi, the CNS said it was ok to continue with Hydroxy while on the heparin, but I am only on a low dose so that could be why.Karen

Raphael_UK profile image
Raphael_UK

Yep I was given daily Heparin while i was in hospital with Covid.

Nickthedevil profile image
Nickthedevil in reply to Raphael_UK

Sorry to hear you were poorly enough to be hospitalised with Covid. I hope you are fully recovered

Borage profile image
Borage

I get jabbed with heparin every time I am admitted to hospital with angina and every day while I am there. I get some colourful, large bruises.

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